ArticleMolecular genetics & genomic medicine2021
Family caregivers of rare disease: A survey on health-related quality of life in family caregivers for Gaucher disease patients in China.
Article in Molecular genetics & genomic medicine, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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Who cites it
11 citing papers in PubMed, 17 citations in OpenAlex.
- Defining joy after a genetic diagnosis: A narrative inquiry.Journal of genetic counseling · 2026Article
- Beyond illness severity: transdiagnostic cognitive vulnerabilities as independent predictors of psychological distress in parents of children with rare genetic disorders.Frontiers in psychiatry · 2026Article
- Health-related quality of life and productivity burden for non-professional caregivers of adults with rare diseases: a real-world study.Orphanet journal of rare diseases · 2025Article
- "In God We Trust": An Exploratory Study of the Associations Between Religiosity and the Caregiving Experiences of Parents of Children with Rare Diseases in Poland.Journal of religion and health · 2024Article
- Experiences of quality of life and access to health services among rare disease caregivers: a scoping review.Orphanet journal of rare diseases · 2024Article
- Burden of caregivers of patients with neuronopathic and non-neuronopathic Gaucher disease in Japan: A survey-based study.Molecular genetics and metabolism reports · 2023Article
- A global neuronopathic gaucher disease registry (GARDIAN): a patient-led initiative.Orphanet journal of rare diseases · 2023Article
- Prevalence of depression and anxiety, and their relationship to social support among patients and family caregivers of rare bone diseases.Orphanet journal of rare diseases · 2023Article
- Valuing the "Burden" and Impact of Rare Diseases: A Scoping Review.Frontiers in pharmacology · 2022Article
- Family caregivers of rare disease: A survey on health-related quality of life in family caregivers for Gaucher disease patients in China.Molecular genetics & genomic medicine · 2021Article
- Predictors of self-care among informal caregivers of patients with inflammatory bowel disease: a cross-sectional study.Annals of gastroenterologyArticle
Corrections and comments
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Authors and funding
9 authors at 4 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundRare diseases affect the health-related quality of life (HRQoL) of patients and their family caregivers (FCs). However, limited evidence is available on the HRQoL of FCs of patients with Gaucher disease (GD). This study aimed to assess HRQoL and related factors among FCs of patients with GD in China.
methodsA cross-sectional online survey was conducted with 49 FCs recruited by convenience sampling. Participants completed the Medical Outcome Study Short Form-36 (SF-36), Zung's Self-Rating Anxiety Scale, Zung's Self-Rating Depression Scale, the Multi-dimensional Scale of Perceived Social Support, the Herth Hope Index, and a questionnaire about FCs' and patients' sociodemographic characteristics. Single-sample t tests, one-way analysis of variance, and multivariate linear regression analysis were used to analyze the data analysis.
resultsParticipating FCs had significantly lower scores in all eight SF-36 domains compared with the general population in China (p < 0.01). FCs' gender, education, daily care time, anxiety, and the perceived disease severity of patients were significant predictors of SF-36 physical component summary scores. Caregiving help from others, anxiety, perceived disease severity, and medical insurance type were significant predictors of SF-36 mental component summary scores.
conclusionThe findings showed FCs of patients with GD had lower HRQoL. There is an urgent need to address the health concerns of FCs of people with rare diseases including their HRQoL.
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